Thursday, October 28, 2010

We are asked all the time if Brayden can communicate his needs. I assure people (and doctors) that he lets us know when he does not like something or is mad. He has mastered that skill (but cannot "do" happy yet).

So did Brayden like the pumpkin seeds?

How about now?

Now?

Despite his complaining, his little hands did not leave the plate of pumpkin seeds. He

Wednesday, October 27, 2010

Brayden uses switches. The switches a big buttons used to activate things like a toy.

Brayden has a switch that is recordable. We record messages on the switch so that when he pushes the switch is says something.

For example:Going to church - Luke records for Brayden "Hi! My name is Brayden!"Going to football - Carter records for Luke's game, "Go Huskies!"Going to a birthday party - Carter and Luke record, "Happy Birthday!"

Brayden has moments when he might hit the switch to hear the message. Most moments he seems to care less if the switch was there or not. We keep trying it with him, it is a great way for him to communicate and play.

Brayden is trying to activate the switches...You know who loves to activate the recordable switch?!

The dog.

One evening, I was in the kitchen, Jeremy and the boys were in the family room. When all of a sudden we heard, "Happy Birthday!" "Happy Birthday!" "Happy Birthday!"

The dog found the switch. She pushed it with her nose several times and was so proud of herself for finding those people hiding inside the switch, from whom the voices were coming.

Monday, October 25, 2010

One evening, he was in just a onezie and diaper (I love him in just a onezie). I picked him up and he felt skinny. I hurried to the bathroom.

Weigh myself holding Brayden - weighing myself = him loosing weight.

I canceled the appointment for the ketogenic clinic because I know that they monitor his calories, intake and weight. And his is off. I know the reason he lost the weight is because of the stomach bug he had and additional stomach issues. All of which take awhile for him to recover from and be able to handle to amount of food they want him to have.

I rescheduled the appointment in a couple of weeks. I hope to catch up with his weight. He is always struggling with it. In fact since January'ish he has been between 26-29 pounds, gaining, losing...the doctors and nutritionist not pleased.

They want him to get about 955 calories in a 24 hr period. We are not reaching that amount but trying.

Yes, I cancelled it because I know that I would be reprimanded and given that stern look that those doctors like to give because Brayden lost weight.

Brayden has a large bald spot. He spends most of his days and nights on his back in one way or another. He needs full head support, thus his head is usually up against something. He turns his head side to side all the time, like shaking his head no. He is not loosing his hair, it just seems to rub away. Lately the bald spot has gotten bigger.

Thursday, October 21, 2010

The pharmacy that we use for Brayden is about 40 minutes from our house. The pharmacist and his wife run the shop.

We know them by first name now, as well as the other staff. They have made so many things for Brayden, called his doctors, done research, advocated for certain types of medication, etc.

We have to use a "speciality pharmacy" because of compounding, specially made items because of the ketogenic diet (no sugars/carbs in the medicine...ibuprofens are all coated and that cannot be taken on the keto diet so the pharmacist makes capsules that we can use for Brayden), special things ordered, etc.

The pharmacy that we have been using is now ONLY doing compound prescriptions.

The choice: Do we move everything over to one pharmacy? Or split between two, one for compounding and one for all others?

We want one pharmacy, since we typically need things every 1-2 weeks. Over the past two years he has been on about 15 different medications, not all at the same time, but we need help coordinating his ever changing medications.

I have been calling around. Most pharmacies (Rite Aid, CVS, grocery stores, Walgreens,...) do not do what Brayden needs.

We live in Loudoun County, some what of a suburb to Washington DC. We have lots and lots of things around and always many options. Except for speciality pharmacies. There are now only 3 within a 60 mile radius in VA.

Yesterday, I gathered Brayden medications, which thankfully is at a low right now (5 + several ones we use as needed, ie Diastat), and headed to a new pharmacy.

I drilled the pharmacist with questions:

1. Can you provide these medications?

2. He is on the ketogenic diet, everything MUST be sugar/carb free. Can you make the medications that way?

3. Will you call the doctors to coordinate prescriptions, refills, etc if needed?

4. Can the doctors call and/or fax in prescriptions?

5. How quickly are the orders filled? How quickly are speciality items filled or time needed to order them?

6. If you do not have a medication, can you order it?

7. How many pharmacists are at the location? (I like to get to know them since we deal with specific things and I always have questions)

8. Are pharmacists available by phone for questions?

The new pharmacy answered all of the above questions to my liking.

Final two questions:

9. Do you take our insurance? Then will you process Brayden's supplemental insurance as well?

10. How do we transfer over ALL his prescriptions?

All prescriptions are now at the new pharmacy. Hopefully, it will be a smooth transition. Medications are crucial to Brayden's well being and his daily care, it cannot be messed up.

Yes, I was the crazy mom unloading all those questions in the pharmacy...again, something I never thought I would do...interview a pharmacy.

Wednesday, October 20, 2010

Last night Carter had football practice. Jeremy and Luke were at soccer. I loaded Carter, Brayden and myself into the car and headed off to the football fields.

Brayden and I sat in the car, I was sipping hot tea and Brayden snoozing on and off, while Carter practiced.

At the conclusion of practice, I was waiting with one of the coaches, his son, another player and Carter. The coach started asking the boys about their siblings.

One boy said to Carter, "I know your brother. He has really yellow hair."

Carter, "Yep, that's Luke. And I have a brother who is 3. He is missing lots of pieces in his brain!"

I chuckled out loud. I have not really heard Carter describe Brayden another than when one of his friends asked what was "wrong" with Brayden. It was kind of funny it hear Carter say it with excitement and funny to see the coach's face look quite bewildered by Carter's description of his brother.

I felt the need to explain to the coach my chuckle and Carter's description. I said, "Our youngest is severely disabled and that seems to be the best way his brothers can explain him."

The little boy then said, "I know a boy who is missing his arm and fingers!"

The coach seemed to have no idea how to make sense of this conversation so I quickly spoke up and said, "Many people have different disabilities and they learn to do things in many different ways. It is pretty cool to see what can be done."

Thursday, October 14, 2010

I never quite know how to explain Brayden to people. Most of the time, children are easier to talk to about him than adults. Children's curiosity is, for the most part, innocent and genuine.

Most of the children in our community, school and church have been around Brayden enough to know that he is different. They do not treat him poorly and in fact many of them come talk to him or ask great questions...like this one from a little girl at church, "Can I get pushed around like him, it looks like fun?"

Recently, Carter and Luke had a friend over. This little boy seemed freaked out by Brayden. He would look at him from the corner of his eye. I usually tell the children that they can say hello to Brayden because he likes being around others. This little boy wanted nothing to do with talking to him.

I did not think much of it until. I saw him awkwardly cross the room and around a table, in what looked like a path to avoid coming to close to Brayden. Then as it came time for him to go, he needed to grab his coat and backpack...which was hanging on the chair next to Brayden. The little boy's eyes were big. He stood back as far as he could, stretched out his arm and reached for his things...staying as far from Brayden as possible.

I found myself just watching and not addressing the little boy's actions. I really did not know what to say or what to think about it.

Tuesday, October 12, 2010

Brayden is non-verbal. He cries, screams and occasionally makes a "happy" noise.

According to the Verizon automated system, he say FIOS.

A couple of times I have been in the car with Brayden trying to set up call forwarding from my home phone to my cell phone (I do not want to miss those doctor calls, that we wait and wait for). The frustration with the Verizon automated system is only compounded when every time Brayden makes his "happy" noise it transfers me to FIOS.

Of course the rule with any child is that they are completely quiet, not needing, talking, whining or even acknowledging you, until you are on the phone.

We do not even have FIOS. I just want to call forward. Apparently Brayden wants FIOS.

Friday, October 8, 2010

I know many children with special needs/medical needs have a difficult time sleeping. I do not know how the families manage.

Lately, Brayden has had problems sleeping. He has been crying (really screaming) at bedtime. He eventually settles down. Last night it was a long time...he went to bed at 7:00 and screamed until 11:00. He was so tired that he could not sleep.

This has been happening during the day too. For the majority of his life Brayden has had no problem falling asleep whenever he felt the need. It did not matter where, the amount of noise or things going on; he could just fall asleep. Now he seems so tired and cannot manage to take a nap. Some days, he screams and screams. Eyes bloodshot from exhaustion. He just needs to sleep.

I realize it may be his age. He is three years old. The age when many children grow out of a nap. But he needs his sleep. If he does not sleep during the day, he has problems settling down at night.

Tuesday, October 5, 2010

That was Brayden's day yesterday...school to the ER and thankfully home.

Brayden loaded the bus yesterday morning doing pretty well. I was picking him up at school early to take him for a g-j tube replacement at Fairfax Hospital (the tube replacement has to be done in radiology).

When I arrived at school, I found the school nurse with him and he was vomiting. He was vomiting uncontrollably. He continued to vomit for over an hour...non-stop vomiting, no break in between the vomits; a lot of saliva, dry heaving and then came some blood.

I had Luke with me. I hurried back to Waterford, dropped him off for afternoon kindergarten. Then Brayden and I headed to Fairfax Hospital. On our way, I called the doctors.

I was kind of panicking a bit. Of all the times Brayden has vomited, he has never vomited for this long without reprieve. He was miserable.

The GI doctor said to bring him to the ER.

In the ER Brayden was given Zofran to help the vomiting. It did and knocked him out. He was doing fine. The ER doctor spoke to Brayden's GI doctor (who was at the hospital that day). Whatever the GI doctor said convinced the ER doctor to release Brayden. He was discharged from the ER and then we headed down the halls to radiology to have his g-j tube changed.

A quick g-j tube change; the fastest one ever, thank the Lord.

Brayden and I loaded the car (thank the Lord for valet parking) and headed home. Hooray for home!

Sunday, October 3, 2010

I was talking with my father the day after going to the new respite house. My mother and father (like many others in the room) choked back the tears that day as the story was shared...about how difficult it was to raise a child with a lot of medical needs, all the while trying to raise their other children, be a family, function in life...this was the Solomon's story. The brochure and website shares many similar stories. My father said that he and my mother just thought about how this was my family...we are that family dealing with special needs.

I sat and listened to the story. I have read the stories.

As you hear the stories, you cannot help and think about how hard THEIR life. Yes, they have joy (because they know it is all part of God's plan) but it is hard. It is exhausting. It takes a lot of strength and support.

Brenda Solomon said about it being a crisis with no end in sight. It is one thing to deal with a crisis that you KNOW is only temporary but it is a completely different thing when there is NO light at the end of the tunnel because this is your life.

It is my life. {Deep sigh} That's us. It may sound strange but sometimes I forget. I guess that is good. I realize that we are getting the hang of things and every day does not feel like a crisis. But sometimes I forget and I need to be aware of it...for my family. I cannot take for granted this road that we are on. It is hard. It requires a lot from us, the family and our faith. Many families stumble and crumbled when their children have special needs.

I guess it is just hard to hear sometimes.

We are a family of five: the oldest boy with big brown eyes, the middle boy with white blond hair and the youngest with a feeding tube, wheelchair and much more. That's us.

Friday, October 1, 2010

I had the privilege of attending the Dedication Ceremony of Jill's House. And my parents joined me!

Jill's House was founded by Lon Solomon (pastor of Mclean Bible Church) and his wife Brenda because of their daughter Jill. Jill started very early in life with seizures, leaving her physically and mentally handicap.

Jill's House is an overnight facility for respite care. The first of its kind in the US.

The dedication ceremony was wonderful. Brenda Solomon shared a little bit of Jill's story and how their discovered the need for help...respite. She cried...everyone around with tears in their eyes.

I sat and felt it deeply. Our stories are similar...with seizures, doctors, ER, hospitals, keto diet and even having the youngest be the one with medical necessities dictating the day while still trying to parent older boys.

After the ceremony, which was pushed inside due to the insane amount of rain, they cut the ribbon! Everyone had to watch it on the big screen since we could not be outside. We then headed into Jill's House to explore and tour.

Words cannot explain the details and thought that was put into this facility...it is high class. With murals on every wall, big bedroom and bathrooms then 3 sensory rooms, library, computer lab, therapeutic pool, indoor gym, art room, music room and outdoor playground.

Overwhelmed with the beautiful facility, we wandered through all the rooms. Even had a chance to talk with Brenda, who I recently come to know (a very tiny bit) and adore, introduce her to my parents and give her a big hug.

God is not only using the Solomon's life to impact thousands of people that attend MBC but through their daughter Jill, to bring care to those families dealing with special needs.

A breathtaking day.

Side note Brayden is not old enough to use the facility yet, they take children 6-17 yrs old.

Psalm 139: 13-18For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.